For many, ALS appears without warning and seemingly without reason. But for more than 10% of ALS patients, ALS may be caused by specific genes in the body’s cells that may no longer work correctly. This is called genetic ALS.
At insideALS.com, you will find resources about genetic ALS that have been developed by Biogen in consultation with ALS specialists and patient advocacy groups for people living with ALS and caregivers.
ALS is a rare, progressive, and fatal disease that usually affects people between the ages of 40-70. It is usually divided into two groups: familial ALS (fALS), which is inherited from a family member and sporadic ALS (sALS), where the person diagnosed does not have a known family history of the disease.
Approximately 5-10% of ALS patients have fALS, while sALS accounts for about 90-95% of all ALS cases. Recent scientific discoveries have identified more than 25 genes that have been linked to ALS. A number of these genes have been found in both fALS and sALS patients. This means that even if a person is the only known family member diagnosed with ALS, a genetic component may be involved. Cases that have a genetic component – across both fALS and sALS – are referred to as “genetic ALS.”
To date, over 25 genes have been discovered that are associated with ALS. The most common genes are SOD1 and C9orf72, which are described in more detail below. By learning more about the genes associated with ALS, the ALS community hopes to learn more about the disease and how it may progress.
Genetic testing for all people living with ALS—those with a known family history of ALS and those that do not have a known family history of ALS—may help in understanding the condition better and could assist with long-term life choices. Clinical trials targeting genetic forms of ALS offer a reason to find out which ALS-associated genes you may carry.